Why “labels are harmful” is harmful

Trigger warning: Discussion of teacher abuse of a student, meltdowns, and the consequences of growing up with undiagnosed disabilities

Okay, so there is going to be a lot of personal history in this post. I present myself as a case study of why the idea of labels being harmful is both harmful to kids with disabilities and harmful to adults with disabilities. Since, by necessity, I’m discussing me in this post, it’s going to be a lot of anecdata, but I might follow it up with some studies later on to back up what I’m saying because I’ve lost count of the disabled people and disability services professionals who’ve told me analogous stories to mine. I know I’m not an isolated or unusual case here.

I’ve posted elsewhere about why labels are harmful is bullshit, a post I will probably recycle at some point for a post here. Today I want to argue that the labels are harmful bullshit is actually actively harmful.

My family moved around a lot when I was a kid. By the time I was 10, I’d lived in 3 countries, 5 Canadian provinces, and in 8 different cities. One such move came when I was around 6. At my new school, I didn’t make much friends. I was lucky to be placed in a pilot program the school was running of semi-personalized curricula for each student, so I could learn at my own pace in everything. I devoured the coursework and blasted past the grade requirements for some subjects in under a month (math, English, science), while in others (handwriting and phys ed, naturellement), I was below grade level. Still others, I was about on par with my grade peers (History, mostly). I was never bored, was the teacher’s pet, and thrived.

My parents were disturbed by my lack of friends.Since I had access to the school library (books!), I spent my recess and lunch hour reading, and I’d bring two or three books home after school, and return them to the library, finished, the next day. My vocabulary exploded, and other kids started to complain that I talked “like a book.” When offered the chance to go play with other kids, I’d shrug and say, “I want to read.” and then go to my room and read.

My parents took me to a child psychologist. Their previously over-friendly (no concept of boundaries), extremely active (hyperactive) child had suddenly transformed into a bookish, mostly-sedentary recluse. The toy cars she’d previously been obsessed with stayed forgotten in the closet in favor of books that she blasted through almost unbelievably fast. This was a Problem. Given the recent move, they guessed I might be depressed and took me to a child psychologist.

Meanwhile, my teacher had also noticed my lack of interest in other students. He noticed I was cheerful when I got to spend time doing what I liked (books!) and that you could bribe me to tolerate even my most hated subjects so long as there was a book in it for me when I was done. He heard me info-dump to other kids and realized that a lot of my conversation was me repeating lines that I’d read in books, trying and failing at seeming clever by clumsily repeating witticisms that had worked well for characters I liked with no regard to the context they were said in.

My teacher, I’m almost certain, had an autistic kid. He saw the similarities between me and his son and broached the subject with my parents. I wasn’t having too much trouble at school yet – even though I didn’t have any friends and the other kids thought I was a very strange kid indeed, with my books and my stutter and my lack of concern for manners or eye contact – but, he worried, it was only a matter of time before different meant bullied, and he knew that the school could better protect me if I was diagnosed. He told my parents this, while I sorted the books in the back of the classroom by reading level, subject, author (alphabetically) and title (also alphabetically). I imagine they all thought I wasn’t listening. He did not use the words “autism” or “Asperger’s”, but rather “difficulty socializing,” “too attached to routines,” “fidgety,” and “different,” cushioned by “smart,” “enthusiastic,” and “pleasant.” He suggested my parents see a developmental psychologist, who’d helped his son with similar issues.

My parents figured that since I was already seeing a psychologist, they could just ask that psychologist what she thought. Problem: This psychologist did not specialize in developmental disabilities. She told my parents that I was not depressed (correct), that I was introverted (correct), and that they and I would both be made miserable by trying to change my natural disposition (correct). As for the problems socializing and fidgetyness, I was probably shy and nervous, since the only disorders that cause that were Autism and ADHD, and only boys get those. Plus, she told my parents, labels are harmful because they limit the kids they’re placed on. She told my parents I didn’t need special education or extra help, I needed a gifted and talented program (as if the two are mutually exclusive), and that if I wasn’t in one, my boredom would lead me to act out and cause behavior issues at school. She encouraged my parents not to get me “labelled,” saying that it would be a shame to see a bright girl like me limited in such a way.

Things were fine until we moved again. Third grade, new school. This school had no gifted and talented program. I went from doing pre-calculus to arithmetic, and was faced with similarly shocking level changes in all of my subjects. Handwriting was the worst: rather than having a teacher who would accept that I couldn’t write quickly and give me extra time, my new teacher not only refused extra time, but expected me to do cursive. Neatly. I can’t do that at 26, nearly two decades later. It was unreasonable to expect it of me at 8.

I started to have trouble in school. A lot of trouble. Not with the subject material because aside from handwriting and phys ed, I was ahead of grade level in this new school system. I had trouble behaviorally. A lot of trouble behaviorally. Just as the psychologist had predicted, I acted out when I was bored. Since the work was so easy and the teacher refused to let me do anything except sit quietly at my desk when I was done, I was bored a lot. By the end of the first month, I spent more time in the in-school suspension room than in class.

Not that I minded, because my first-grade teacher’s prediction had come true as well: Different now also meant bullied. I did not make a good first impression when I spent my introduction to the class monologing about weather until the teacher had to cut me off and send me to my new seat, and tormenting me quickly became the class past-time. The teacher didn’t like me because of my behavior problems, so she turned a blind eye or punished me for being the victim just to get me out of her hair. I soon knew the secretary on a first-name basis and became her darling.

“I don’t know why she keeps sending you here, sweetheart,” the secretary would say. “You’re a great kid!”

And for her, I was – the in-school suspension room was quiet, free of bullies, and the secretary would let me read as much as I wanted of whatever I wanted once I was done my work (boooks!), so I wasn’t bored. Why wouldn’t I behave?

A conference was called to sort out my behavior issues. The teachers and new principal asked me why I was so bad in class but so good for the secretary and I shrugged and said, “I dunno.” They asked how I felt in class. After a long silence during which I fidgeted a lot, I said to the table in front of me, “Bored.” What bores you was the next question. “All of it.” I replied. There was a lot of back-and forth that I ignored in favor of studying the pattern on the table. I remember my parents arguing for me getting a modified curriculum, the principle debating whether to skip me ahead, and my parents arguing that I was behind enough socially already and that skipping me ahead would only make things worse. In the end, they agreed that I would stay with my age-peers, but I’d be given more difficult work and that I could grab books to read at the back of the room when finished.

Those accommodations never happened. My teacher felt that she could hold my more difficult work hostage to me “behaving” and regarding getting a book, “If I let you, then everyone will want to”. So I kept misbehaving. And getting sent to the in-school suspension room. Other teachers joked that they should water me like one of the plants, I was there so much. I would tell them they shouldn’t water me since I’m not a plant. I didn’t get why they found that funny.

Another conference was called. I told the principal that the work was still too easy and that I wasn’t being allowed to get a book. The teacher lied and said I was. I got punished for being a liar and melted down, throwing a chair at the wall and hitting myself. My parents were shocked at the “tantrum” since I’d never been a difficult child – my mother says I seemed to skip the terrible twos entirely, so long as I had blocks to stack and stuff to sort.

My parents locked me in their car while I melted down and went inside to finish the meeting. They told me later that the principal suggested they take me to a developmental psychologist, since he felt my explosion wasn’t normal and I was definitely having a lot of trouble socially and behaviorally. He said he wasn’t sure it was me willfully being bad, since I was so much better in the in-school suspension room. He said there might be something making the difference between the two environments. My parents refused. “There’s nothing wrong with you that discipline and more difficult work won’t fix.”

This pattern repeated with varying severity all through school, as my handwriting fell further and further behind grade level, and the bullying worsened. I was either the pet or the terror, and it all depended on whether the teacher kept me interested. I got a reputation for being high-strung, unpredictable, wild, undisciplined. Later: untidy, disorganized, scatter-brained, rude, and overbearing were added. I was told often by teachers that as smart as I was, I could be anything, but I probably wouldn’t because I didn’t want to. My third grade teacher was the first, but not the last, teacher to predict that I would never amount to anything in life and would likely be in jail by 20. She was the only one that went so far as to call me worthless and a bitch, or to tell other kids to hit me for misbehaving, though.

I was frequently singled out in gym for humiliation by the teacher since he felt I couldn’t possibly be that bad at [insert skill here]. Except I was.

Sometime around fourth grade, my parents had started giving me “handwriting lessons” where they’d scream at me that it wasn’t hard and that my hand didn’t hurt as I cried and tried to finish the damn sheets neatly enough to satisfy them. I never succeeded. When the pain of my hand got too much, I’d refuse to write anymore and then my parents would physically restrain me and my father would force me to finish the sheet neatly. “There!” they’d say cheerfully when he finished, giving me a hearty smack on the back. “That wasn’t so hard, was it?”

“I hate you,” I’d often reply, and get sent to my room.

That went on for over a year. One day, on summer break, my mother thought some extra practice might be a good idea for me, so my handwriting didn’t atrophy over the summer. I came inside from climbing trees and saw the handwriting set up on the dinner table and immediately melted down. I don’t remember what happened. I do remember that whatever I did, my throat and hands and head were sore afterwards and it convinced my parents their “lessons” were making me miserable, because I never had to do them again, and my parents secured an agreement from the school that I wouldn’t have to do any more “extra practice.”

The school responded by end-running my parents’ refusal to force me to torture myself with handwriting lessons: They started making handwriting quality part of the marking scheme for all of my subjects, and they refused to let me type. My grades in all subjects plummeted. I’d been a straight 95%+ student. I still deserved those marks, but because I physically couldn’t make good enough handwriting, my marks plummeted to low 70s. I spent hours copying over my assignments, often to no avail. When I hit burnout, I wouldn’t do any homework, because a 0 I deserved was less painful than a 72% I didn’t.

(Note that I was, and remain, a perfectionist. A 100% was the only mark I ever felt happy about, and if I got below 95%, I would cry about it. A mark below 75% would induce meltdown. If I made myself not care and refuse to do it, it protected me from the inevitable disappointment of an low mark that I couldn’t help.)

The bullying got worse. I came home crying at least weekly, and I had a lot of bruises on my back and sides from kids hitting me. They made a game of tag out of it: They’d hit me hard enough to bruise, and then go tag their friends. “[my name] germs, no returns!” they’d sign-song. Another time, they refused to call me by name, and instead only referred to me as Beaver – because of my overbite – for two months. And so on. I told my parents, and was told that I should stand up for myself. I stood up for myself in school and got punished by the teachers. I told my parents and was taught that I shouldn’t stand out so much. I tried not standing out, and my clumsy attempts at fitting in were met with derision. I told my parents of my failure, and was told that I should develop a thicker skin. I was over-sensitive. I should just ignore them. I wondered how you could “just ignore” every single interaction with your age-peers, all school day, every school day, for years on end. They told me to stop being defeatist, and that I could fit in if I wanted to, but I must like the attention of standing out.

I began to internalize a lot of bad things. Lazy. Willful. Bratty. Careless. Apathetic Doesn’t want to succeed. Stupid. Freak. Ugly. Thin-skinned. Over-sensitive. Defeatist. Etc. I was receiving the messages on so many fronts – from my parents, from my teachers, from my classmates – that I felt they couldn’t all be wrong. Maybe I really do just not want to work hard enough. Maybe it really is all my fault.

I have spent the time since I left high school trying to erase messages I internalized by the time I was twelve. All because I wasn’t given the right “label” and instead of receiving help for my disabilities, I was written off as a lazy brat. That is how a refusal to give your kid the gift of a correct diagnosis harms them. Because they’ll get labelled anyway – and it will be with words a hell of a lot more painful and a message a hell of a lot more difficult to overcome than simply “different” or “disabled.”

Things, for me, only started turning around when I had a teacher who was willing to look past the endless notes of “does not work up to potential” “is careless in her work” and “behavior problems need work” and actually try to get to the root of the problem. She challenged me where appropriate and accommodated me where necessary. She taught me that I could succeed when I wanted to – I just had to be allowed to type in order to be able to. She arranged typing accommodations and got a label that worked for me, rather than one that worked against me. I wonder how much less pain and how much more progress I could have made in school if more than just my handwriting issues had been addressed. I’ll never know, because my parents refused to even investigate the possibility their kid might have a disability, out of fear of some ominous “label”.

But let me be perfectly clear: Not having any label didn’t stop me from getting labelled, and not having a diagnosis did me far, far more harm than having a diagnosis might have. I don’t know how to convey this to someone who didn’t grow up with absolute knowledge that you would never amount to anything, but the baggage of my childhood is such that every birthday I spend still not in jail and not in a substance abuse induced stupor and not in criminal activity? Is a surprise to me. Because on some level, I still feel like I’m destined for criminality and a bad fate. It’s all my teachers ever expected me to amount to.

And as a result of that? I’m a 26-year-old PhD candidate with two degrees under my belt and a 4.3GPA, and I still don’t feel good enough. And I don’t think I ever will.

Think on that, and then try to tell me that it’s better not to get kids appropriate diagnoses for their disabilities.

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13 thoughts on “Why “labels are harmful” is harmful”

Hi, this is a long comment, because there’s so many things you say that are similar to me and I want to mention a lot.

The perfectionism!

My PE teacher in middle school said I was the only person he had ever known who burst into tears when getting a B. (Before that, we were just graded on attendance, and I was always there). (PE was a struggle. It was the worst. I hated it too) … (I also found out years later that I technically got a B in Social Studies in 5th grade (memorizing 50 states and capitals and locations), but my teacher thought I couldn’t handle it, so she gave me an A on my report card).

I was also lucky in handwriting (but horrible at it) (often I look back at notes and such and find them illegible). I think it was mostly because I read things fast enough that I had enough time to write (well, not neatly, but ) legibly. (Because I would usually have 2 or 3 or 4 times extra. And other than in handwriting assignments, which were always just inexplicably fails (but luckily we stopped those before we got “real” grades). Things weren’t graded on quality of handwriting! Although I did sometimes get things marked off because they were completely or partially illegible to the teacher (but mostly I just got warnings).

But mostly the books!

We read everything all the time. The worst was when we were reading books in class and we had to read them out loud. It took so slowly to get through the story and I’d always get in trouble for reading ahead. (But it took so long!) (Also, you weren’t allowed to read books from the back of the classroom after you had already finished your work? Did they just expect you to sit and not do anything! That’s sort of really ridiculous.) That’s

Also, labels…

My parents also didn’t believe I needed a label. Luckily for me, I think, the school was small and K-8 and I never changed schools. My mom was a teacher, so most of the teachers knew me and my strangeness. (My teachers did several times meet with my parents, especially when I was younger because I wouldn’t answer questions in class, so they thought I wasn’t learning anything.) My mom still picked out which teacher would be better for me based on what she knew of them.The kids had all known me for a long time, and because there was only 60 or less each grade total, I was lucky that my grade was generally nice enough. (Often I was ignored, but I think I was rarely actively bullied). (Ignoring was ok, because I had books!) I generally was on the outside, and an still concerned so much about what I say, what I do, how I talk. Because I knew there was something different and wrong about me, and I wasn’t sure what it was.

So I think that labels would have helped and figured out solutions and explanations. Maybe I could have avoided the horrible, horrible retreat I had to go on (there was yelling and horrible bonding events which involved physical contact with other people and a lot of noise and bad stuff like that). I got by without them, but I don’t think any label would have hurt. (Especially since it would be confidential medical information mostly, so just GETTING a label wouldn’t necessarily change things anyway, just what you do with it). So even with less bullying and stuff, maybe even a good scenario, it would have been helped by labels. I was just lucky to have work-arounds and benefits and accommodations that worked and be in a small enough system with a mother who had enough time to make things work.

(Is this ok? I’m worried it’s not because I had a different/not-as-traumatic experience as you, so I hope its ok, but I’m not sure. Because there’s still similarities I want to pull out).

(Because I’m worried about hurting or upsetting you somehow. And I don’t want to do that at all. So if this is bad in some way, please tell me or delete it or something. Although can you tell me HOW it is problematic if you can[if it is] so that I can avoid making the mistake again.) (Because I’ve been rewording it for a few hours trying to make it ok, but I really don’t know, so I’m going to take a chance and post it.)

Perfectionism: Yeah, I had a few teachers go, “Uh, I’ve never had this happen before” when I started crying over a high 80s mark.

Handwriting: The issue, for me, was that even though I read incredibly fast (I can read about 350 pages of a paperback novel in an hour), I can either write neatly at a glacial pace or scribble illegibly at something approaching a normal speed.

Reading in class: I hated reading aloud, too. Especially since I do have a stutter and I could read a lot faster than I could speak, so my eyes would get ahead of my mouth and then I’d stutter even more… and my third grade teacher (who refused to believe I could read silently) would use that as an excuse to mark down my reading ability. Because punishing a kid with a speech impediment for having a speech impediment totally makes sense. */sarcasm*

And, yeah, I didn’t mention it because the post was already getting on the long side, but the knowing I was different and having all the adults in my life lie to me about it was probably one of the worst things growing up. I can’t even articulate it.

I pretty much read my writing through a combination of guesswork, practice, and remembering what I have already written. I am not entirely sure how teachers managed to do so. I guess they’ve had more practice in guesswork. (And it usually took them a while to learn my writing, I write in a weird mix of cursive and print, to speed it up. Except, if I try to write fast, my writing gets flatter and flatter until i am just drawing a mostly horizontal line on the paper with a few squiggles maybe… which is why I have to watch my speed/what I am writing if I want anyone including myself to reread it).

Wow. That was just so painful to read. I’m in awe of your ability to write everything down so clearly and structured to the point where I think everyone can understand how this is a really bad thing, not just like it was for you but in a general setting as well. Your narrative makes so much sense. And yet it’s still personal and so painful and my heart hurts for what you had to go through. I’m so sorry.

I meant painful in the sense that no child should have to go through what you went through. I was hurting on your behalf but not for myself because I never had problems like that in school. The reason why I never got labeled or got any extra support is because I did fine in class, even though I floundered everywhere else. But all my school work was perfect and all my teachers loved me. Case closed. Social problems? Not important when school results don’t suffer.

I too found this painful to read; I could so easily have ended up where you were if I hadn’t been so lucky as to have teachers who were wonderfully understanding and supportive. I still had a spell where things fell apart and I ended up changing schools, but although it was traumatic at the time I ended up better off. I must revisit this time at some point and write about it in more detail, but in my own time: I don’t like to think about it too often.

Handwriting has always been difficult for me because I can either write slowly, concentrating on the letter formation in which case I can’t keep up with my thoughts, or scribble quickly and struggle to read it afterwards. After only a short time my hand starts to become painful where I grip the pen and I get cramping in my fingers. I remember making errors in math because I misread my own writing, confusing z and 2, 1 and 7 for example (since then I’ve always crossed my z’s and 7s in the European style to distinguish them).

Luckily in the school I moved to after the trouble I was able to submit typed essays — and I had the means to type and print them which wasn’t universal even in the late 80’s. I’m much more comfortable typing than writing by hand even though I never learned to touch type: I’ve been using a keyboard for 30 years and I’m completely at home with it.

Perfectionism is another trait I know well. It can have negative aspects including the fear of failure (in one’s own eyes more so than others’) leading to risk-aversion, and a drive to seek validation through praise. But there is an upside which is an almost obsessive attention to detail and accuracy.

As for labels… I had certain labels growing up: shy, gifted, clumsy, genius, spastic. Some felt good, others (from various bullies) hurt. A couple of child psychologists tried to find more labels (neurotic amongst them) but nothing that fit and they quickly gave up: I wouldn’t interact with them and they were overwhelmingly concerned with my completion of schooling rather than my mental wellbeing. I still have labels now: weird, special, friend. I’ve managed to drop the negative ones from my personal word cloud.

I believe that labels are simply a shorthand form of description. A single label provides some information but it is so incomplete that it could never describe a person accurately. The danger arises from defining oneself exclusively by a label; that label is not a name, not one’s identity. It is only a sketch of one facet of a whole person. It is not the labels that are harmful but one possible consequence of their application. To dismiss them as harmful is to deny the benefits of a useful classification: in the case of an Autism Spectrum label it would be to deny access to accommodations and support services. In my opinion this could have far more harmful effects.

I’m going to round this response off here before it ends up longer than the original post with a thank you for such a well-written, well-structured, thought-provoking and touching account.

Like you, handwriting is physically painful for me. The pain starts after about 2-3 sentences of writing as an ache in the middle of my forearm, on the underside. From there, it metastasizes to the base of my thumb, then to my palm, then my fingers, and from there, it radiates up my shoulder and along my neck. It grows sharper and more painful as it spreads. Eventually, if I keep pushing myself, my back and head get in on it and my entire arm is intensely, sharply painful in a way that’s hard to describe and the lightest touch sends stabs of pain along its entire length. The closest thing to what that sensation is like if you spill hot sauce into a cut – that combination of burning and stinging that’s so intense it brings tears to your eyes. That’s why I used the word “torture” to describe the handwriting lessons. I chose that word intentionally, and I wasn’t aiming for humorous hyperbole.

I always cross my Zs and my 7s, too, because it helps me distinguish my 7s from my Ts and my Zs from my 7s and from my Fs. Likewise, I always draw my lowercase As as they appear in type, because if I don’t, I have a hard time telling them from lowercase Os and Us. I write lowercase d in a sort of pseudo-cursive, oddly, because if I don’t, I might screw up and accidentally put the circle over the line or on the other side and then I have a hard time telling whether or not it’s a d or a b or occasionally even a p. My lowercase Rs are always written strongly – like, with so much pressure I indent the next few pages – because if I don’t, I’ll go too far and turn an R into an N. I also purposefully put a space between lowercase R and lowercase n when I’m writing words like “turn” because if I don’t, the combination will look like a lowercase M and then I’m left wondering why I wrote about heartburn medicine in my lab book (and why I didn’t write an s after the m). My printing script is very idiosyncratic, and it’s all about helping me compensate for my poor handwriting ability. Unfortunately, that’s part of what makes it so hard for others to read. XD

I begged my parents – literally begged, like down on my knees and everything – them to let me homeschool in high school or for them to send me to a boarding school just so I could get away from the local school (we lived in a rural area at that time, so that school was the only option in a 100km radius). They said no because they felt it would be “cowardly” of me to “let” the bullies chase me off. So, uh, that was the last I spoke to them about the bullying issue. Supportive on that issue, they were not.

They claim now that if they’d known it was “that bad,” they would have let me homeschool, but I call bullshit because I don’t see how they could not have known it was “that bad”, considering their kid was literally begging on her knees to not have to go back. Plus, there was the whole “I have no friends” thing and the coming home crying at least weekly thing and the fact that my sister continued the bullying in the house. No, I think they did know it was that bad and had convinced themselves I deserved it. And now that there’s more public recognition of the harm that bullying does to kids, they’re trying to convince themselves that they couldn’t have known how bad it was because that’s easier than admitting they done fucked up.

Because my parents do that. A lot. Even if the fault is 100% theirs, and there’s no way it could be anyone else’s, they’ll find a way to blame it on someone else. Anything to keep from admitting they did wrong. Even over something as minor as accidentally smacking me with something. “Why did you move in the way?!” “Uh… I’ve been sitting here for an hour.”

Or they’ll lie about what happened and convince themselves that their wrong version of what happened is actually what happened – according to them, I never told them anything or gave them any hint about the bullying, at all. Which is just plain not true. I have copies of emails I sent them as a kid – because of my stutter, I couldn’t talk when I was upset, so I’d send emails – about what happened in school. Reality disagrees with them.

But I swear, it’s like they think admitting fault and apologizing for anything, ever, will kill them or something. They can never admit they screwed up, and they will say and pretend like whatever version of reality makes them look best is what actually happened – so when “bully victims are just oversensitive” was in vogue, they bragged about making me go back to the school and tough it out. Now that the fact that bullying is abuse is being more recognized, my parents pretend they had absolutely no idea what was happening. Which is why I don’t trust them to tell the truth if/when I get evaluated for ASD. They won’t do what’s best for me. They’ll do whatever they think makes them look best.

They also weren’t receptive to me asking them to get me evaluated for Asperger’s when I learned about it at 15 – my father laughed in my face and reiterated that I just didn’t want to fit in, while mother asked why I wanted to be an [ableist slur]. So, that was the end of me talking to them about the possibility of me having ASD.